H037 Evaluation of perspectives of patients and carers during advance care planning (ACP) discussions within the Huntington’s disease service at a tertiary centre

<h3>Background</h3> Without an effective therapy, palliative care in Huntington’s disease (HD) should be considered as the disease progresses. The UK End-of-Life Strategy (1) recommends Advance Care Planning (ACP) to facilitate discussions about end-of-life care treatment preferences between patients and caregivers. Timely discussions are particularly important for people with HD (pwHD) given the difficulties ascertaining capacity in advanced stages (2). <h3>Aims</h3> To explore experiences and views of pwHD and caregivers during ACP. <h3>Methods</h3> A telephone questionnaire was conducted with pwHD and caregivers attending our ACP clinic. This included 12 questions on future planning, expectation management, understanding progression, family communication, care options, legal documentation, clinically assisted nutrition/hydration, quality of life (QOL), end-of-life preparation, emotional challenges, and caregiver burden. <h3>Results</h3> Key themes included the prompting of discussion which was felt to be useful for future planning due to difficulties discussing care spontaneously. This led to patients and caregivers feeling informed, even if not prepared, about disease progression, the future, and death. Patients described a feeling of catharsis after articulating their wishes. Caregivers felt reassured knowing what to expect and with increased burden sharing amongst families. However, this was balanced with apprehension about future care needs and provision, anticipated loss of loved ones, treatment futility, and feelings of guilt/responsibility for family impacted by the disease. QOL improved for some, with a new focus on comfort, time together, and happiness. However, this was in the context of worsening disease effects. <h3>Conclusions</h3> ACP discussions improve understanding of disease progression, facilitate open family communication, and improve future planning, despite emotional challenges. <h3>References</h3> NHS England (2021). Ambitions for palliative and end of life care: A national framework for local action 2021-2026. Available at: https://www.england.nhs.uk/publication/ambitions-for-palliative-and-end-of-life-care-a-national-framework-for-local-action-2021-2026/ Farag M, Salanio DM, Hearst C, Rae D, Tabrizi SJ. Advance care planning in huntington’s disease. <i>J Huntington’s Dis</i>. 2023;<b>12</b>(1):77-82. doi: 10.3233/JHD-220559. PMID: 36970913.